When I decided I wanted to do a redesign of this website, it was of vital importance to me that the site be two things: informative and visually engaging. I’m a graphic designer, and I know how important it is to make things look decent if you actually want people to read them, no matter how interesting or useful the information is.
As I started doing visual research for the project I noticed something about most of the other websites that I found captured my interest, which was that they all used photos. I saw this as something of a problem, as i’m not really much of a photographer, but I wasn’t exactly about to spend my precious money i’d been saving for my trip on hiring someone else to do it.
My only other option would have been to use stock photos of models trying to look sleepy, but I have a bit of a problem with this when I see news sites etc. doing it as it seems disingenuous. Our sleepiness is not one that means we happen to put our heads down on a table for a perfectly poised couple of seconds: it is real, ongoing and has a range of different effects on our lives. Part of the reason I wanted to revamp this site was so that it can be used as more of an awareness tool, which to me means showing the reality of narcolepsy as much as possible.
So that was that, I had to find myself some narcoleptic models!
A couple of months ago (a bit before I left Sydney) I put a call out over facebook for any narcoleptics in Sydney to contact me if they were interested in letting me take some photos of them for the website. I was surprised to get a flood of responses, but due to scheduling and communication issues I managed to get some time with three lovely ladies with narcolepsy to take the photos you see throughout the site.
I’d just like to note here that I did really want to find some men to include, as the lack of representation of men with narcolepsy is something I have noticed and spoken about to some other PWN about. The view of sleep and therefore narcolepsy as being “weak” or “feminine” is something that doesn’t benefit anyone, and if there are any narcoleptic men around who would like to model for me please get in touch (i’m currently in Sweden, so you’d have to probably be somewhere around here of course!) Similarly, I would have liked to include some older people, but the male thing is just a particular issue I have.
Anyway, rant aside, my point is that although my three models just happened to be females on the younger end of the spectrum, this was purely due to the fact that these are the people who made themselves most available to me. And I don’t just have an obsession with redheads 😉
The three people I met up with were Alanna, Meghan and Emily. All three were totally lovely, obliging and keen to help out the cause. I would like to give them my endless thanks for representing PWN everywhere by agreeing to appear on the site, and hope that doing the actual shoots wasn’t too awkward… as I said, i’m a pretty amateur photographer!
It was lovely to meet (or spend more time with) all of you, and I hope you are happy with the way things came out 🙂
 x Elle
Hi there – my name is Andy – I’m a producer with the Kyle and Jackie O Show in Sydney. How are you?
Kyle and Jackie O have a segment called ‘In Their Shoes’ where the guys take a ‘This Is Your Life’ style interview with people with a vast array of stories. We were chatting amongst ourselves in a meeting and got onto the topic of Narcolepsy and thought the story of someone who suffers with this condition would be fascinating to hear. Was wondering if there was someone who suffers from narcolepsy that’d be willing to share their story with Kyle and Jackie O? It’d be a friendly, insightful chat and the guys are really keen to hear their story from the source rather than second hand. Does this sound possible?
Let me know and we can organise something.
Kind regards,
Andy
Hi Andy, thanks so much for getting in touch! I just sent you an email about it 🙂
Wow this is amazing! I know this post is quite old but id really like to know if this ever eventuated and if so how i can get my hands on this interview? I feel like its great to read about narceolpsy through blogs and social media but i really feel like it needs to be a conversation. The fact that people who have access to making this conversation happen where it reaches people in their homes and vehicles etc is is amazing! let alone the simple fact that people without narcolepsy are curious enough to sit down and listen and educate themselves about what narcolepsy really is is so moving. Being diagnosed with narcolepsy is hard enough, but i feel like one of the most heartbreaking parts about it is that its not part of enough conversations that cinema hasnt already blemished. My favourite thing to do is to talk to people about what narcolepsy really is and all the crazy nightmares and silly situations ive been in, create a platform for everyone to feel engaged and informed and be able to laugh with them as well. If theres anything people of the world have in common its the having a good sleep! So we should talk about it! Also my name is kristy, im 26 and from the Central Coast NSW. If anyone could let me know if this eventuated id be so grateful 🙂
Hey Kristy! It didn’t happen unfortunately as I was living overseas at the time they sent the message. I did refer them to another friend in Sydney who has narcolepsy but I don’t think anything ever eventuated. I had completely forgotten about this to be honest, but since I’m back in Sydney maybe I should get in touch with them again to see if they would be interested…
This whole site is amazing.. I have no words! I love it… thank you 🤗